Mobile palliative care teams in Germany

Dr. Katharina Rockmann

Specialised palliative home care (PALLIAMO), Regensburg

What to expect in this talk

Talk about facts

Talk about numbers

Practical aspects

Personal experience

Facts and numbers

Germany at a glance…

82 Mio inhabitants

900.000 die / year (10,5 %)

250.000 die from malignancy

≈500.000 would require / benefit from palliative

care services!

Where do patients die in Germany?

hospital 56%

nursing home 23%

at home 19%

hospice 2%

Source: German society of palliative care (DGP)

Where do patient want to die?

Gomes at al.; Palliat Med 2012 (PRISMA)

Bell et al.; J Pain Symptom Manage 2010

private sphere being with family

safety

freedom

dignity

Palliative Care services in Germany

inpatient services:

palliative care units: n>300

hospices: n=240

community services:

hospice services: n=1500

100.000 volunteers

specialised palliative care teams:

SAPV: n=300

Source: Deutscher Hospiz und Palliativverband DHPV 2016

Who is looking after palliative patients in

the community?

if there is still specific treatment going on:

oncologists ( hospital / practice)

in case of best “supportive care”:

family physician plus community nurse

if additional care is needed: SAPV (10%)

SAPV in Germany

What is specialised palliative home care (SAPV)

palliative care

specialist

PC nurses

pastors

physiotherapists

volunteers

social worker

„…mobile palliative care unit“

End of life care

time

fun

cti

on

death

„Best supportive care“

SAPV

„total pain“

≈ 10% of palliative patients

weeks

Who is eligible?

• want to stay at home

• supportive relatives

• „let nature takes it´s course“

• advanced, progressive disease

• complex symptoms, difficult to control

• special knowledge/ skills required (team!)

SAPV

n=300 teams (1 team per 200.000-300.000 inhabitants)

>140.000 pt / year

covered by public health insurances (0,1% of health expenses)

only palliative care specialists

end of life care at home, in nursing homes and hospices

Specialised palliative home care

(SAPV)

non profit organisation (NPO)

registered co-operative

maybe linked to hospitals

every team has it´s own contract with health

insurances

various concepts possible

SAPV PALLIAMO Regensburg, Germany

4 doctors

6 nurses

1

social worker

1 cleric

volunteer hospice

team

physio

hospice Palliative care

unit

≈300.000 people (Regensburg)

+ ca. 65.000 people (Kelheim)

70 km

60km

PALLIAMO

...a few numbers....

2016: 275 patients (≈20 at times)

average duration of care: 21 days

16 visits /patient

average visiting time 58 minutes

89% died at home

97% place of death = preferred place

...a few more....

94% died “peacefully” (dying phase)

65% died during the night

77% had continuous parenteral medication (of

those who died at home)

Practical aspects /

personal experience

What are the needs

…of the patients?

…of the relatives?

….of the team?

What does the patient need the most?

adequate symptom control

support for his family

respect of his will / wish

What does the family need the most?

We did a questionnaire

(qualitative research)

6 weeks after death – letter sent to family

two questions:

1) „what did you appreciate the most?“

2) „What did you miss?“

30% reply

answers:

“the fact that someone really cares“

„availability“

„someone really cares“

-what does this mean?

our answer:

“pilot“ system (as opposite to shifts)

„pilot system“

one team member is in charge of the patient (“pilot”):

mon-fri, 9.00h-18.00h

1 nurse + 1 doctor

stays in close contact, visits regularly (1-7 times/wk)

builds up relationship

identifies needs

calls for additional support (i.e. doctor, cleric,

psychologist…)

After hours shifts: 1 nurse /1 doctor on call (changing

every day)

„pilot system“

advantages:

only few different people at the patients place

(“private sphere”)

needs are often better identified

precise observation of course of disease

no loss of information

„availability“

-how to deal with that?

you don´t have to be available for everyone at

anytime!

different categories of care

„consultation“

„coordination“

„Full care“

24 hour service:

• instable patient

• dying phase

• syringe drivers

• family support

A

B

C

SAPV: categories of care:

24h on call ???

problem: remote areas or few staff:

• cooperation with emergency doctors

• introduce team / emergency plan

• leave telephone number

• cooperation with GP´s

• may participate in after hours shifts

• cooperation with hospitals

• palliative care units / ED

• cooperation with nursing services

24h on call ???

Keep it simple:

• not everyone needs the full service

• availability by phone sufficient?

• „good night-calls“

• be creative (neighbour, friends…..)

• Emergency plan!

• On demand medication!

emergency plan !!!

advanced care planning (where to die?)

detailed information

for family

for any health care professional

when to call us

when to call GP

when to call ambulance

what medication to take when

Name

diagnosis ...“best supportive care“

„end of life care“

what medication

to give when!

what has been

discussed ?

On demand medication

individualised therapy

keep it clear and simple

consider the route? (s.c., oral, s.l.) !!!

always adress:

pain

breathlessness

nausea, vomiting

restlessness, anxiety

needs of team:

„how to maintain a healthy team“

„care for the team- be available!“

low hirarchy - appreciation!

show faith and trust- reassure!

ask regularily for stress / burden / personal

capacities

regular supervision

keep it simple

team meeting once a week sufficient?

documentation on paper (admission, course of

disease, discharge)

easy communication: secure messenger

services (mobile phone: i.e. „Threema“)

Go step by step!

....you all do a wonderful job!

www.palliamo.de k.rockmann@gmx.de

…..Keep it simple…….

subcutaneous infusion

medication in 500ml normal saline:

7 gtt/min = 500ml/24h

regular subcutaneous injection

put all medication for 24h in a 12ml syringe

fill and insert „butterfly“ canula

inject 2ml every 4 hours

What factors influence the place of

death ?

diagosis (malignant /non malignant)

recognition of terminal illness / impending

death

provision of care

symptom controlled?

Supportive family?

Billingham et al.; BMJ supportive &Palliative care 2013

How do patients want to die?

„pain free“

„peaceful“

„dignified“

associated with preferred place of death

Vig et al; Arch intern Med 2004

symptoms

pp

pain

vomiting

breathlessness

psychiatric

wounds

urogenital

23%

Pumps / syringe driver

56%

21%

subcutaneous

pumps

intravenous

pumps

none

• keeping control

• freedom

• private sphere

• safety

• dignity

• with family

need to be adressed

by home care services

Needs

AAP

ambulant palliative care

SAPV

10%: additional SAPV

Physician family

nursing service volunteers

oncologist community

Funding (SAPV)....

funded by public health insurances (since

2007)

>100 Mio. € / yr in Germany (2016)

= 0,1% of health expenses